November 06, 2008

Children and Clinical Trials

I was delighted to hear about this new resource for children and parents about the issues, concerns, and importance of participating in clinical trials to help determine what is truly safe treatment for children. The idea that it is important to go beyond simply reducing dosage according to weight, and to assess the true impact of differences in children's minds and bodies is one that has been recognized for a long time but reaches new prominence and authority with this endorsement from our government. Bravo!

Children and Clinical Trials: http://www.nhlbi.nih.gov/childrenandclinicalstudies/index.php

Children & Clinical Trials

"Children have often had to accept medicines and treatments based on what is known to work in adults. As a society, we should not agree to this "hand-me-down" approach. Many efforts are being made to provide proper research for children, to find the best treatments, drugs, and devices for them.

Research in children has helped to save lives and improve health. Children no longer suffer from many common childhood diseases like polio, measles or the flu as they did in the past. Therapy for childhood cancers and premature babies has improved survival and quality of life for children.

You may be wondering what clinical research is. This is the way that drugs, devices or other treatments like behavior therapy are tested in humans to see if they are safe and effective. This site will help you to find out about clinical research in children...no more hand-me-down research."

Posted by pfa at 11:01 AM | Comments (0)

September 23, 2008

H.R. 2820: Reconstructive Surgery Act of 2007

Many of the readers of this blog have probably already heard about the Reconstructive Surgery Act of 2007.

H.R. 2820: Reconstructive Surgery Act of 2007 (GovTrack.us): www.govtrack.us/congress/bill.xpd?bill=h110-282

As described by the Congressional Research Service: "Amends the Public Health Service Act and the Employee Retirement Income Security Act of 1974 (ERISA) to require a group health plan that provide coverage for surgery to also cover reconstructive surgery, including medically-necessary treatment for preoperative and postoperative care. Defines "reconstructive surgery" as any medically necessary and appropriate surgery performed to correct or repair abnormal structures of the body caused by congenital defects, developmental abnormalities, trauma, infection, tumors, or disease to: (1) improve functions; or (2) give the patient a normal appearance. "

As you can see, much of the terminology is vague, probably intentionally so, to allow evolution of the specific interpretation. Still, it is no surprise that this is generating a vast amount of discussion among the facial difference communities.

The main supporting group is:

Association of Independent Craniofacial Advocates (AICA): http://www.aica-advocates.blogspot.com/

They are seeking 10,000 signatures on a petition in support of the proposed legislation.

Care 2: The Petition Site: Support for HR2820 - The Reconstructive Surgery Act: http://www.thepetitionsite.com/1/craniofacial

Whether you sign or not, simply reading the comments at the bottom is an education into the many facets of this complex issue.

For more information, here is a Google search.

Google Search: hr2820 OR "hr 2820" OR ("house of representatives" 2820 reconstructive) OR "reconstructive surgery act": http://tinyurl.com/6djz9c

Posted by pfa at 10:50 AM | Comments (0)

June 22, 2008

I-Face - A Social Network for Teens with Facial Difference

From the Changing Faces group, there is a new social network for adolescents aged 11-21.

iFace: http://www.iface.org.uk/docs/index.php
"Changing Faces - changing the way you face disfigurement"

iFace

They have a significant presence in a variety of teen-oriented social networking spaces with what appears to be an active community and good moderation and etiquette guidelines. Here are some of the other places they are present:

Bebo: www.bebo.com/ChangingF

Changing Faces: www.changingfaces.org.uk

MySpace: www.myspace.com/changingfaces_uk

Show Your Face: www.changingfaces.org.uk/showyourface/

There4Me: www.there4me.com

Posted by pfa at 03:39 PM | Comments (0)

June 20, 2008

Facial Difference in the News

In other blogs, I have found tracking and reporting on the news a way to keep information flowing. In this blog, I find I am routinely disheartened by how facial difference is reported in the media. I will go look at the news, track it, find nothing I would care to repeat, or news items that would (rightly) cause dismay and concern among the readers of this blog.

Today I was struck by two articles and how different they were. These are just examples, each at one end of the spectrum, illustrating the range of perspectives on this topic.

ARTICLE #1:
How disfigured Cody Hall got back her smile: http://www.telegraph.co.uk/news/uknews/2039134/How-disfigured-Cody-Hall-got-back-her-smile.html

"Cody's mother, Theresa, 43, said: 'We want to be able to show people how she has turned out and just how great she looks.' ... Cody said she is keen to have more laser surgery but wants to finish with the operations when she turns 18. She said: 'By the time I am 18, I don't think I want any more. Then I'm an adult and I want to do something else and move on.' "

ARTICLE #2:
Camp Face Opens For Kids With Facial Differences: http://wjz.com/seenon/camp.face.2.736039.html

"While we can do surgery and try to help the children, the important thing is how they deal with it internally," said Kolk. Camp Face does this by allowing the children to interact with others who are dealing with the same issue. ... "Camp Face helps build their confidence by letting them be themselves," said Summe.


Posted by pfa at 03:25 PM | Comments (0)

April 23, 2007

Taxi Security Shields Cause Craniofacial Injuries

Be darn sure you buckle up when riding in a taxi. Those plastic partitions are dangerous!

New data is reported to show that taxi security shields are a significant cause of craniofacial injury and trauma. Alternatives are being considered, including use of cameras for security or cushioning the shields.

Doctors Predict Fewer Taxi Craniofacial Injuries, By Gabrielle Birkner (New York Sun, April 2, 2007): http://www.nysun.com/article/51639

"Though crash rates for taxicabs are one-third less than those for other vehicles, 3,349 medallion taxi accidents involved injuries or fatalities in 2004, the most recent year for which data are available. Among those seriously injured in an accident, 68% of yellow cab passengers experienced head or face trauma, compared to 49% of those riding in liveries and 35% in other vehicles, another Schaller Consulting study released last year showed."

Schaller Consulting: Taxi Regulation and Policy: Taxi and Livery Crashes in New York City, 2004 [Released 2006]

Posted by pfa at 10:44 AM | Comments (1)

January 11, 2007

Recognition Beyond Burned

In not-so-recent news, I found this article about a photo exhibit in the New York area. The photographer was Steve Lobel, and he tells the story of why he made an exhibit of beautiful photos of burn survivors, and how he learned to see their beauty. Here are a few articles about the project, named "Recognition Beyond Burned."

New York Times: NY Region: Facing Their Scars and Finding Beauty: http://www.nytimes.com/2006/06/18/nyregion/18burn.html

RNews: Artwork Helps Burn Victim Relief, by Marcie Fraser: http://www.rnews.com/print.cfm?id=38565

More about Steve Lobel.

Posted by pfa at 09:24 PM | Comments (0)

October 19, 2006

Introducing Let's Face It at UM

The University of Michigan is proud to announce that the Let's Face It web site is being transferred from the Let's Face It USA organization to UM this month. The Let's Face It web site provides information and resources for persons with facial differences, their friends and family, and clinicians. At the University of Michigan, we hope to enrich and expand the variety of clinical information and resources on the site.

Our Mission:
To advance knowledge about, by, and for people with facial differences and to promote their full and equal participation in society.

Our Vision:
To be recognized as a reputable source of information and resources that those with facial differences, those who care for them, and the general public can go to with confidence and a desire to learn.

The original "Let's Face It" web site has been at:
http://www.faceit.org/

The new UM version of the site will be unveiled on October 27th with an event featuring Betsy Wilson, the founder of the Let's Face It USA web site. The UM version of the site will be at:
http://www.dent.umich.edu/faceit/

Press Release:
Craniofacial Disfigurements Web Site to be Transferred to U-M -- "Let's Face It" Leader to Speak at Dental School Oct. 27
http://www.dent.umich.edu/about/aboutschool/news/news2006/news100406.html

Event Information and Poster:
Facing Life With a Different Face -- Betsy Wilson:
http://www.dent.umich.edu/faceit/FaceItPoster.pdf

Posted by pfa at 09:52 AM | Comments (0)